November 20, 2015 at 3:27 pm #90073christine1015Participant
I had mine tested at MSKCC too and they did not detect any mutations either! My Onc said that was very unusual but I am not really sure what it means. I think it just means the targeted gene therapies won’t work for me.October 21, 2015 at 9:10 pm #90072gavinModerator
Thanks loads for that Derin!!October 21, 2015 at 3:06 am #90071lainyParticipant
Derin, fantastic information and thank you so very much!!! Hope you are doing well!October 21, 2015 at 2:46 am #90070hamptonsarasotaMember
So everyone knows, I had genetic sequencing done this past May at Sloan Kettering. They are working on a CC database of gene mutations so I was asked if I wanted to participate and that there was no cost for the genetic testing. No bill to me or to my insurance company.
I don’t know how it would work with non-patients, but I believe that they would still be interested in getting as many patients in the database as possible. Dr. Maeve Lowry is the oncologist I’m seeing up there who is involved in the database as well as other CC phase 1 trials. Office phone is 646-888-4543. Contact them if you have interest in the database or the genetic profiling.October 20, 2015 at 9:10 pm #90069gavinModerator
Wish that I could help with the testing results but I can’t I’m afraid and would net even like to take a stab at them to be honest.
7 Miles, wow! We would all struggle to keep up with your mum I would think!! Yes she certainly is doing great and I hope that the scans go well and please remember to let us know how that goes as well.
My best to you and your mum,
GavinOctober 19, 2015 at 10:25 pm #90068marionsModerator
Daisy……your Mom is unstoppable – a 7 mile run? Fantastic!
The entire field of genetics and genomics is very difficult to understand, not sure I ever will be able to comprehend the complexity of it all.
In this case I read it the same as you in that their testing revealed no genomic alterations revealing presently available, targeted drug. But, we don’t know how comprehensive this testing is. As far as I know, institutions testing is limited whereas other labs such as Foundation Once conduct large scale genomic profiling.
MarionOctober 19, 2015 at 9:07 pm #11790daisyParticipant
I just received my mothers genomic sequencing report….it read NO CLINICALLY ACTIONABLE DNA SEQUENCE VARIANTS WERE DETECTED.
This report was done at Barnes Jewish Memorial…sample taken from actual tumor following surgery.
She had another test done at Yale…still waiting on results.
The rest of the report is jibberish to be but the front pages interpretation says what I wrote above. Does this mean they were unable to pin point the specific mutation she has therefor finding a targeted therapy would not be possible.
Anyone know how to decipher this report?
She is doing great right now….she ran 7 miles yesterday! She will have a scan in a few weeks to see how the SIRT worked. I’m just trying to stay one step ahead.
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